1. < Kidney & Bladder

Kidney Disease Cure: What's the latest?

Posted by mikek206 @mikek206, Jul 23, 2021

I read An article a few years back saying...A university in California has produced a compound that stops Kidney progression in its Tracks...What Ever Happened to that..? Did some big Pharmacal Company buy it and put it on the shelf for Money...

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

czsalt64 | @czsalt64 | Dec 31, 2021
In reply to @mikek206 "Trying Very Hard To Do Just That...Thanks..." + (show)
@mikek206

Trying Very Hard To Do Just That...Thanks...

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That is fantastic! 10 years! Prayers 🙏 for you. I wish you all the best this year. Why doctors don't want to listen to us is bullshit. We know ourselves the best.

REPLY
petuniamom567 | @petuniamom567 | Dec 31, 2021
In reply to @m1rmiller "That's my goal. EGFR between 12 and 15 for almost 10 years now. Managing to avoid..." + (show)
@m1rmiller

That's my goal. EGFR between 12 and 15 for almost 10 years now. Managing to avoid dialysis so far, although had to switch nephrologists until I found one that was willing to let me try to go without dialysis. Not easy to figure out how to get enough electrolytes to stay alive but not too much. Spent one night in the emergency room for hyperkalemia but so far guessing and experimenting and researching nutrition content of everything I eat has worked.

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Every nephrologist should work with a dietician. They don't. You're on your own. Nephrologists just stand by and watch. You seem to be doing an excellent job. A job you shouldn't have to do. Treatment of CKD remains a mystery to me especially in the age of small insertion operations. There should be ways to treat the kidneys but there don't seem to be until you get to dialysis and transplantation. Something very wrong with medical system. Good luck with your self-help in the future. Perhaps you should keep a diary and about it what you'v done. May 2022 be much better than 2021.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 31, 2021
In reply to @petuniamom567 "Every nephrologist should work with a dietician. They don't. You're on your own. Nephrologists just stand..." + (show)
@petuniamom567

Every nephrologist should work with a dietician. They don't. You're on your own. Nephrologists just stand by and watch. You seem to be doing an excellent job. A job you shouldn't have to do. Treatment of CKD remains a mystery to me especially in the age of small insertion operations. There should be ways to treat the kidneys but there don't seem to be until you get to dialysis and transplantation. Something very wrong with medical system. Good luck with your self-help in the future. Perhaps you should keep a diary and about it what you'v done. May 2022 be much better than 2021.

Jump to this post

@petuniamom567 There are many causes of chronic kidney disease. Hereditary factors, high blood pressure, diabetes, medication, lifestyle choices are among them. For me, the cause is due to an ultra rare autoimmune condition [less than 50 people in the world ever diagnosed with it, no others in USA], that is clogging and shutting down the filtering components of my kidneys. Dietary restrictions are very tricky in kidney patients, as we check lab results and tailor our diets to what the numbers show, constantly tweaking what goes in to our bodies. Each patient has the choice to advocate for themselves, learn what has worked for others, and apply it to their own case. Believe it or not, most doctors really like when a patient educates themselves and works towards helping make it all work. Who knows a patient better than the patient? Dialysis and transplant are not a cure to kidney disease, they are just another treatment. I am also undergoing chemo for multiple myeloma, just finished round 5, and my oncologist is giving me as light a dose as he can, in order to not upset my kidneys more. They are at 15% function right now.
Ginger

REPLY
1 reply
ayu50 | @ayu50 | Jan 1, 2022
In reply to @gingerw "@mikek206 Welcome to Mayo Clinic Connect. Gosh, that would be a wonderful thought, stopping kidney disease..." + (show)
@gingerw

@mikek206 Welcome to Mayo Clinic Connect. Gosh, that would be a wonderful thought, stopping kidney disease progression! I certainly understand your concern about pharmaceutical companies trying to head that development off "at the pass". Here's hoping others might recall this article, as I do not.

I am currently Stage 4, at 22% function. It's a daily chore to keep that up as high as possible, controlling blood pressure and stress, plus diet.

While we wait for others to chime in, are you willing to share your kidney disease journey with us?
Ginger

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Hi my name is Beatrice. I was hospitalized in March for respiratory distress. When I was in the hospital, a full blood work was done and it was found out that my creatinine level was very high and I was told that I would be on dialysis to regularize it. Since April I have been on dialysis, First I started with 2 sessions a week and progressed to 3 sessions a week which I am actually on now. But I realized that the level keep fluctuating. I m in a French country and I dont know whether I need to convert the figures to get the equivalent to that of the3 US. If not when I did a test in November the level was 45 but when I repeated the test on 22 December it has gone up to 70 which is the reason why I want to what type of food to eat to lower creatinine levels, At the present moment I am on Stage 5 though I had stopped urinating but I have started urinating although not yet as much as I used to. Will be grateful for any ideas. Thank you.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 1, 2022
In reply to @ayu50 "Hi my name is Beatrice. I was hospitalized in March for respiratory distress. When I was..." + (show)
@ayu50

Hi my name is Beatrice. I was hospitalized in March for respiratory distress. When I was in the hospital, a full blood work was done and it was found out that my creatinine level was very high and I was told that I would be on dialysis to regularize it. Since April I have been on dialysis, First I started with 2 sessions a week and progressed to 3 sessions a week which I am actually on now. But I realized that the level keep fluctuating. I m in a French country and I dont know whether I need to convert the figures to get the equivalent to that of the3 US. If not when I did a test in November the level was 45 but when I repeated the test on 22 December it has gone up to 70 which is the reason why I want to what type of food to eat to lower creatinine levels, At the present moment I am on Stage 5 though I had stopped urinating but I have started urinating although not yet as much as I used to. Will be grateful for any ideas. Thank you.

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@ayu50, Happy New Year and Welcome to Mayo Connect. Beatrice, I wish that I knew more about kidney disease to share with you. I actually have a liver and kidney transplant, but because my kidney failed suddenly I was given emergency dialysis and only remember doing/eating only what I was instructed to do.

I want to share this information from the U.S. Department of Health and Human Services about Chronic Kidney Disease. There you will find this list of topics that look like they cover some of the concerns that you have mentioned.
-The National Institute of Diabetes and Digestive and Kidney Diseases:
What Is Chronic Kidney Disease?
Causes of CKD
Tests & Diagnosis
Managing CKD
Eating Right
Preventing CKD
What If My Kidneys Fail?
Clinical Trials

https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd

Beatrice, Who is monitoring your care during dialysis? What are they telling you about your CKD?

REPLY
1 reply
ayu50 | @ayu50 | Jan 1, 2022
In reply to @rosemarya "@ayu50, Happy New Year and Welcome to Mayo Connect. Beatrice, I wish that I knew more..." + (show)
@rosemarya

@ayu50, Happy New Year and Welcome to Mayo Connect. Beatrice, I wish that I knew more about kidney disease to share with you. I actually have a liver and kidney transplant, but because my kidney failed suddenly I was given emergency dialysis and only remember doing/eating only what I was instructed to do.

I want to share this information from the U.S. Department of Health and Human Services about Chronic Kidney Disease. There you will find this list of topics that look like they cover some of the concerns that you have mentioned.
-The National Institute of Diabetes and Digestive and Kidney Diseases:
What Is Chronic Kidney Disease?
Causes of CKD
Tests & Diagnosis
Managing CKD
Eating Right
Preventing CKD
What If My Kidneys Fail?
Clinical Trials

https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd

Beatrice, Who is monitoring your care during dialysis? What are they telling you about your CKD?

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A Happy New Year to you too and thanks for the information. I will check it later. I am seeing a nephrologist who also gave me a special diet I should be on.. He is the one monitoring my dialysis. Actually the thing is that I never experienced the symptoms of the CKD. My feet were not swollen, I did not have any nausea, loss of appetite in fact no symptoms to show that I had CKD it is only when I did my bloodwork that they saw that the creatinine level was very high. I also suffer from high blood pressure, which is suspected of being the reason of the CKD. hemoglobin was very ,low and apparently was due to the fact that the kidney was not receiving enough blood.at least that is what I was told. I was urinating all right and using the bathroom and it was only about two months ago that I stopped urinating but since about a week ago I have started having the urge to urinate and it has started coming again in trickles. So far the creatinine has gone down considerably and the reason why I asked if anyone knew a diet is because last month on the 6th of November when I did the test the creatinine level was 45. But when I did the test again on the 22 December it was up to 70. I really don't know what I did wrong for it to rise again. So I would like to know what type of food I should eat to lower the creatinine level than raise it up. That is my concern now, Thanks once again,

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 1, 2022
In reply to @ayu50 "A Happy New Year to you too and thanks for the information. I will check it..." + (show)
@ayu50

A Happy New Year to you too and thanks for the information. I will check it later. I am seeing a nephrologist who also gave me a special diet I should be on.. He is the one monitoring my dialysis. Actually the thing is that I never experienced the symptoms of the CKD. My feet were not swollen, I did not have any nausea, loss of appetite in fact no symptoms to show that I had CKD it is only when I did my bloodwork that they saw that the creatinine level was very high. I also suffer from high blood pressure, which is suspected of being the reason of the CKD. hemoglobin was very ,low and apparently was due to the fact that the kidney was not receiving enough blood.at least that is what I was told. I was urinating all right and using the bathroom and it was only about two months ago that I stopped urinating but since about a week ago I have started having the urge to urinate and it has started coming again in trickles. So far the creatinine has gone down considerably and the reason why I asked if anyone knew a diet is because last month on the 6th of November when I did the test the creatinine level was 45. But when I did the test again on the 22 December it was up to 70. I really don't know what I did wrong for it to rise again. So I would like to know what type of food I should eat to lower the creatinine level than raise it up. That is my concern now, Thanks once again,

Jump to this post

@ayu50 The rule of thumb for kidney disease patients, is to find foods that meet these criteria: low potassium, low/no sodium, low phosphorus, normal calcium, watch your sugar intake, as well as your protein intake. As some of us like to say, "if it tastes good, it is not allowed. If it is allowed, it tastes terrible!" Limiting dairy to 1/2 cup a day, no sodas, no tomatoes, no potatoes, little red meat.

Here is a link from the National Kidney Foundation that may help you understand the way you and your doctor will work together to get a good diet in place for you. https://www.kidneyfund.org/kidney-disease/chronic-kidney-disease-ckd/kidney-friendly-diet-for-ckd.html My husband is also a kidney patient, and he received a transplant in late 2016. He based his foods on lab results.

We're here for you for any more questions! Let me know what your doctor will be guiding you to do.
Ginger

REPLY
nimalw | @nimalw | Jan 2, 2022
In reply to @m1rmiller "That's my goal. EGFR between 12 and 15 for almost 10 years now. Managing to avoid..." + (show)
@m1rmiller

That's my goal. EGFR between 12 and 15 for almost 10 years now. Managing to avoid dialysis so far, although had to switch nephrologists until I found one that was willing to let me try to go without dialysis. Not easy to figure out how to get enough electrolytes to stay alive but not too much. Spent one night in the emergency room for hyperkalemia but so far guessing and experimenting and researching nutrition content of everything I eat has worked.

Jump to this post

Keep a close eye on your Creatnine. Toxic build up is no small matter can easily effect the heart and then you are in for double trouble. I think you should get the fistula into you and be ready for the inevitable. Sadly it is what it is . No one can sugar coat this

REPLY
nimalw | @nimalw | Jan 2, 2022
In reply to @gingerw "@petuniamom567 There are many causes of chronic kidney disease. Hereditary factors, high blood pressure, diabetes, medication,..." + (show)
@gingerw

@petuniamom567 There are many causes of chronic kidney disease. Hereditary factors, high blood pressure, diabetes, medication, lifestyle choices are among them. For me, the cause is due to an ultra rare autoimmune condition [less than 50 people in the world ever diagnosed with it, no others in USA], that is clogging and shutting down the filtering components of my kidneys. Dietary restrictions are very tricky in kidney patients, as we check lab results and tailor our diets to what the numbers show, constantly tweaking what goes in to our bodies. Each patient has the choice to advocate for themselves, learn what has worked for others, and apply it to their own case. Believe it or not, most doctors really like when a patient educates themselves and works towards helping make it all work. Who knows a patient better than the patient? Dialysis and transplant are not a cure to kidney disease, they are just another treatment. I am also undergoing chemo for multiple myeloma, just finished round 5, and my oncologist is giving me as light a dose as he can, in order to not upset my kidneys more. They are at 15% function right now.
Ginger

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Hi Ginger . I wish you well and hope the new year brings relief to you 🙏🙏🙏

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 2, 2022
In reply to @nimalw "Hi Ginger . I wish you well and hope the new year brings relief to you..." + (show)
@nimalw

Hi Ginger . I wish you well and hope the new year brings relief to you 🙏🙏🙏

Jump to this post

@nimalw Thank you so much! A year ago I never thought I would be in this health situation. What an education and journey in 2021. More to learn and come in 2022, no doubt.

Best of journeys to you, too!
Ginger

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